Thursday, December 31, 2015

The disability and empowerment-themed website The Mighty recently published a post called Introducing: Meltdown Bingo, and sparked an actual Internet meltdown. In the post (since retracted by The Mighty's editors), a parent used the popular Bingo Card meme to detail challenging aspects of their autistic child’s meltdowns.

But here’s the thing most backlash commentary missed or ignored: The mother who wrote the post is autistic. Anyone who clicked on the author bio for the original Meltdown Bingo
post would have read the following: “Christine is an adult-diagnosed
autistic mother to autistic Cameron, 8.” Also missing from the story: The author and her son wrote the piece together, in their family’s personal style of getting through tough times using dry humor.

Being autistic, and even co-authoring the post with her son doesn't excuse publishing a post like Meltdown Bingo -- but the author never, ever meant for her post to be taken literally. She was a first-time autistic author who didn’t realize that sarcasm, unless labeled outright as such, isn’t always recognized on the Internet.

The Mighty should have known, though. They have professional editorial staff, who are sitting on many months of direct feedback from disability, autistic, and neurodiversity advocates, who constantly ask them to center rather than exploit the perspectives of people with disabilities. The editors should have been aware enough to warn the author that Meltdown Bingo could be problematic in a large, autism-oriented arena. They should have known it was a bad decision to publish Meltdown Bingo.

“Bad” from a humanitarian perspective, that is. Possibly quite good for page views. And many of the parents who read Meltdown Bingo believed The Mighty was saying that it’s OK for loving parents to talk publicly and even humorously about their disabled kids’ personal crises. Many of those parents thought, and commented, that Meltdown Bingo was in fact totally accurate and awesome.

In contrast, autistic and disability advocates responded with justified, social media-enhanced outrage, because taking Meltdown Bingo seriously is like laughing at someone for having a grand mal seizure. Meltdowns can be terrifying, as Shain Neumeier explains in Meltdown Bingo: Autistic Edition. Advocates also reinforced the message that The Mighty needs to change its approach to editorial representation, and pay.

The Mighty reacted to the backlash by taking the post down, and offering an apology – but one that, while reaching out to the community for constructive feedback, somehow omits the author's comments and own apology. Though The Mighty's apology did inspire Alice Wong to start the excellent #CrippingTheMighty Twitter campaign, "to highlight great disabled writers and speak to
the problematic aspects of the media's representation of disability," which I hope the editors are reading. In addition, many disability advocates felt the apology was not enough. As the Mighty’s editors are now reaching out to community leaders individually, I hope they listen to them.

The author, upon seeing the backlash, and realizing only too late that her small-scale humor had been stripped of context and turned into a large scale digital Molotov cocktail, attempted to apologize. And this is where matters get even more problematic. Because, from what I’ve observed, her apology was largely ignored, dismissed, or disappeared. This is one version of her apology:

“I am human. I am an Autistic human. I made a mistake that I am very remorseful for. Please, please remember that. Please remember that I am an actual person when (general) you go around the Internet behind your keyboards making blog posts, and petitions about how horrible of a person I am. How I don't deserve to have children. How I would probably kill my child. How I am lying about being Autistic. How I don't deserve to exist. I am completely shattered by this experience for so many reasons.

“I am sorry.

“I wanted to reiterate that I have never, nor will I ever laugh at my son (or any other person with disabilities), but was very much laughing with him. Our family often uses humor as a coping mechanism, and sometimes use self-deprecating humor. I'm sorry our intent was misunderstood. I'm sorry for causing hurt to anyone. Truly. "

So. Where do we go from here?

When people -- disabled or not -- make mistakes that hurt people with disabilities – do we actually want those people to learn from their mistakes so they don’t make them again? I hope we want them to learn. People who make ableist mistakes need to be encouraged to learn. I don’t expect every activist to spill their own spoons by holding the mistake-makers’ hands while they learn. But people also need to pause before going on virtual decapitation sprees with regards to those who err, if the errors are parts of salvageable situations.

We also need those who are doing the criticizing to attempt at least some due diligence about authors’ neurologies -- if those neurologies are in question -- instead of making assumptions. We need those who boost the criticism (and I include myself here; I did not realize the author was autistic until alerted by Patricia George) to also double-check before they amplify, lest they compound hurt in the name of preventing it.

Being autistic does not make one exempt from criticism or ableism, just as it does not make a person automatically correct regarding all issues autism- and disability-related. But when people speaking out against the Meltdown Bingo post realized its author was autistic, it should have given them pause. And it certainly should not have led to claims of the author being an autistic Uncle Tom, or (chillingly) claims she was not really autistic.

Discovering the author's neurostatus should have led to a conversation with the author. She is part of the autistic community. She should have been given the benefit of the doubt, should have been contacted, should have been asked if she understood why Meltdown Bingo was problematic. And when it became clear that she knew she had made a mistake, had learned from her mistake, and was sorry, her neurostatus and apology should have been an addendum to every article on the topic.

We need to do better by our autistic parents, and their unique Venn intersection. Being autistic isolates a person from non-autistic parents in ways that those parents, and child-free autistic people, need to consider more carefully. Autistic parents too often get dismissed by both groups, when, ironically, no one knows better what it is like to be part of both communities.

And we need to remember that autism and disability advocacy is really damn hard, and kind of a minefield. We need to do better when detonations occur, we need to be able to talk to each other afterward even if it's difficult, even if it means making ourselves uncomfortable. Because, when it comes to individuals, there are so many good people in the disability, autistic, and autism communities doing good work. There are also a lot of awful people who sound superficially similar to the good people -- and we won't know who they are, who really doesn't mean well, and who just doesn't get it, unless we talk to them before we talk about them.

Why do some autistic children and teens become self-injurious or
aggressive? How can parents and caregivers help the kids in their care get through
meltdowns safely, protect the kids themselves as well as family members,
and anticipate and avoid future incidents?

Come hear from parents, professionals, and autistic people themselves
about best practices for understanding and supporting autistic people during these kinds of crises. There will be a Q&A after the presentations.

Speakers include:

Dr. Clarissa Kripke from UCSF, talking about overlooked medical and health triggers, as well as meltdown support strategies.

Brent White and Lindsey Anderson from Berkeley's Ala Costa Adult Transition Program, talking about support strategies for outside the home and
classroom, as well as autistic insights on self-injurious behaviors and
what, as children, they would have wanted their parents to know.

The panel will be moderated by Shannon Des Roches Rosa of Thinking Person's Guide to Autism, who is the parent of a high-support autistic teen.